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Knowledge of x increased after a workshop on x and the participants felt more confident about their knowledge of x. Basic staff training happy sheet results for one small workshop is being passed off as academic research. One word. Risible. :rofl::rofl::rofl::rofl:

Yep the ridiculous way they use that questionnaire :banghead: as if it demonstrates anything other than chronically ill people have a range of symptoms

Yes good idea about eye tracking. I’ve heard about it’s use in testing how people use websites, the F pattern, scanning for headings etc. so I imagine there’s data out there about how healthies do that that could be compared against people with ME and other energy limited folks.

https://www.bbc.co.uk/news/health-63744643 Article about work on a universal flu vaccine.

Well NICE could have just put in a straight redirect to the new guidelines. But it’s good at least for a while that people are told the old ones are defunct. In my old job we wouldn’t have still had people going through the landing page 12 months later. but as we’ve seen this new guideline...

So they are saying the reduced subcortical volumes is not indicative of any physical issue it’s because of “predisposing trait factors” so linking it back personality traits…….

when regularly pushing myself over limits eg when I was working part time I would get to a point in phone meetings that my voice would become croaky. Then later (10 15 minutes?) my energy would be drained to the point I couldn’t concentrate any more. So I would say to people in my team if my...

So NICE kept the url for the old 2007 CFS/ME guidelines but now it just acts as a landing page with no content just a redirect to the live 2021 ME/CFS guidelines. which means any links in papers referencing the old guidelines take people to the new. So anyone persisting in referring to the old...

There’s literally been nothing official posted about this in the whole of 2022. It’s as transparent as a concrete block

Good thinking. If I can’t get mine done next week I’ll wait until January

@Andy Early October can’t remember exactly when but i started Covid symptoms 10th and tested positive 11th it was some time the previous week the kit arrived.

I haven’t done my test yet as I was ill with covid when it arrived. As they have this backlog I decided I didn’t need to rush myself to get it done immediately now I’m ok as I have a couple of other things I needed to get done. It will probably get posted start of next week (strikes...

I think it’s absolutely right to get this information out to Practices. Its one element of getting change to happen, giving GPs sensible information about ME and highlighting the new guidelines, education package. It may change things a bit for some people. EG People can ask their GP if...

Yes @DokaGirl acronyms using initials are an infuriating sub set of jargon that groups/professions tend to fall into using without realising they are doing it and is a pretty big communication failure in my opinion.

Yes exactly

Nauseating attitude demonstrated in that first sentence How about a rewrite from the patient perspective. It is a Tuesday morning you had a two hour journey and half an hour spent parking and finding your way round the hospital in time for your 11.30 appointment. You are already exhausted by...

Now 8 days since I had mine punched arm only no symptoms. ME wise I’ve been ok. The jab hasn’t affected my gradual return to my normal after my covid infection

Thanks for flagging @JemPD